LDN Video Interviews and Presentations

Diane - US: HIV, Fibromyalgia, CFS/ME (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Linda Elsegood: Diane from the United States. You take LDN for fibromyalgia, chronic fatigue syndrome, and Diane has been HIV positive for 26 years. Thank you for joining me, Diane.

Diane: You're welcome. My pleasure.

Linda Elsegood: Could you tell me when you first started to become unwell with your fibre morale during your chronic fatigue?

Diane: Approximately 2008.

Linda Elsegood: And what were you noticing at that time?

Diane: Um, I was having several issues. Um, primarily though I, uh. Had passed out, they diagnosed as single P.  Here in the United States. It's an unexplained reason for blacking out. Um, and everything seemed to just go downhill from the day that I blacked out, fell and hit my head.

Um, and, um, was, I was put on, uh. Short term disability, so we could figure out what was happening to me in, in the course of, um, seeing doctors. Uh, I was diagnosed with fibromyalgia. Um, and along with that, uh, unfortunately, a seizure disorder due to the fall and hitting my head. Um, so that started my medical journey, uh, until I had several issues.

That don't necessarily, the seizure disorder doesn't necessarily relate to the ledges now check them, but the fibromyalgia is chronic fatigue. Certainly did. When I was diagnosed with the fibromyalgia, um, my doctor is very much a proponent of low dose naltrexone, and he mentioned it to me, but I did not take it.

Take the advice because it was very concerned about everything that was happening to me. So he mentioned it to me a few times and let me be comfortable with my decision. And then I finally, after a few years, once I got everything else straightened out, um, it was concentrating solely on the fibromyalgia in the chronic fatigue to perhaps give it a try.

And um. Yes. So, um, the winter of , uh, 12 December 2012

Linda Elsegood: and when you first started, did you notice any introductory side effects.

Diane: Well, uh, I have to say, I immediately felt a lot more energy and felt better, uh, within a couple of days. Mmm. Side effects. After a week reselling or first week, I noticed vivid dreaming and insomnia. So. Uh, I spoke to my doctor about it, and he suggested that I, um, just the dust, adjust the dose on my own, kind of play around with it and see what would work for me.

But unfortunately, at the same time, um, I got very sick with a virus that was going around members of my family. Got it. And um. I just became concerned about my immune system being getting so sick with this virus that I stopped the low dose naltrexone. Right. Um, well, when I, when you get very sick like that, and I didn't bounce back from it where my family members did, I was shipped for about six weeks.

With the HIV, even though I have a very healthy immune system, uh, and I didn't fully understand what the LDN was doing for me. I stopped it because I just wanted to get better again. Um, if you asked me today, would I stop it? I would say no, but I didn't know enough back then. Um, what the LDN was, was actually doing for me.

But then it happened again two more times. And it was coincidentally, we stopped the LDN and was off it for several months. I started again, and I got sick again. And I even, um, we sold to the Yahoo group and posted on there, if you have anybody ever, you know, uh. With this society act where you would get this upper respiratory lung, lung infection.

And everybody said, no, that's not normal. You know, nobody had experienced that. So I was concerned that something might be going on with me. So it just seemed that every time I took it, I got sick, and then when I went off it, I got better. It was purely coincidental. It was just a bad year. There was a lot of, uh, the weather was crazy, and there were a lot of germs going around, and so I just got sick a lot, which is not normal for me that year.

So moving forward, um, in the last, last six months, started with the LVN again, and I've been on it on a consistent basis, and it's been working very well for me. Fantastic. So what would you

Linda Elsegood: say now your quality of life is like?

Diane: Um, I would say that taking the LDN has given me back a good portion of my life. Um, prior to the LDN, the fatigue and the, uh, body. Aches and pains were so debilitating that I didn't do a whole lot. Now with the LCN, um, I feel wonderful. Um, and even though I might feel a little achy, uh, I still, it allows me to go out and exercise.

Um, I led to walk—a mile or two. I take yoga classes a couple of times a week, none of which I did before the load check stuff. Um, and socially I'm more open to going out and doing things, being able to, um, Nick commitments, which was something that I couldn't do prior to the LDN. Um. Fibromyalgia also comes with something called fibro fog, where you have cognitive dysfunctions and the inability to concentrate, or for me specifically, organized for an organized task to get things done with the LPN, fibro fog lifted.

And I was able to see my way through the day until you, okay, this morning I need to do this and this, and then this afternoon and that, uh, and to sit in the exercise, which is so critically important to me, the LTN allowing you to exercise that alone changed my life completely. And then it just gets better from there.

Well, it's amazing. Thank you very much

Linda Elsegood: for sharing your experience with us.

 

Any questions or comments you may have, please email us at Contact@ldnresearchtrust.org.  I look forward to hearing from you. Thank you for joining us today. We really appreciated your company. Until next time, stay safe and keep well. 

Debra - England: Chronic Fatigue Syndrome (CFS/ME) (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Debra from England shared her chronic fatigue syndrome (CFS/ME) and Low Dose Naltrexone (LDN) experience with us.

Debra first noticed symptoms in 2009, she also had thyroid problems and was diagnosed by a consultant with CFS after blood tests etc and given medication.

She started LDN 2 years ago recommended by her consultant, at the time she had pain, fatigue, breathing and dry eyes. Initially she has sleeping issues but they soon went away.

Before LDN her quality of life on was 3 out of 10, 10 being the best. Now it is an 8 or 9!

Debra's thyroid issues were also resolved and she recommends LDN to everyone!

To listen to the full story click the video link.

Any questions or comments you may have, please email us at Contact@ldnresearchtrust.org.  I look forward to hearing from you. 

David - US: Chronic Fatigue Syndrome (CFS/ME) (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

David from the United States shares his Chronic Fatigue Syndrome (CFS/ME) and Low Dose Naltrexone (LDN) story on the LDN Radio Show with Linda Elsegood.

David first noticed symptoms of his Chronic Fatigue Syndrome (CFS/ME) in the spring of 2000 upon returning from a trip to the West Coast. For the next 6 months David suffered from a drop in his overall energy levels and was unable to exercise regularly anymore.

David thankfully had prior knowledge of Low Dose Naltrexone (LDN) and sought it out from his local pharmacy. Within three weeks of starting on LDN he was already beginning to feel much better and was able to return to regular running.

David strongly recommends that people research LDN and learn about its benefits so that if you know someone, or even if you yourself, is diagnosed with an autoimmune disease you can tackle the issue swiftly.

This is a summary of David’s interview. Please listen to the rest of David’s story by clicking on the video above.

Dani - Ireland: Chronic Fatigue Syndrome (CFS/ME) (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Dani from Ireland shares her LDN story.

She had longterm fatigue ever since he was a child, then 11 years ago he started having neurological symptoms, she went to a GP and they told him he was stressed so they just gave him B 12 injections. He started to improve but then got very ill, so he went to another GP and ended up getting LDN. He's getting better on LDN, he’s able to move around a lot more and do daily task easier.

To listen to her story click the video link.

Any questions or comments you may have, please contact us. I look forward to hearing from you.

Cindy - US: Hailey-Hailey Disease (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Linda Elsegood: I'd like to introduce Cindy from United States who takes LDM for Hailey-Hailey Disease, fibromyalgia and chronic fatigue syndrome. Thank you for joining me, Cindy.

Cindy: Oh, you're welcome.

Linda Elsegood: Could you tell me when you first started to experience these symptoms?

Cindy: Well, the Hailey-Hailey Disease, I had a major outbreak about 20 years ago, and then it was pretty much in remission until 2009, the fibromyalgia and chronic fatigue syndrome I've had for 35 to 40 years.

Linda Elsegood: And will you give me anything back then for the fibre router and the chronic fatigue?

Cindy: No, in fact back then they didn't even have a diagnosis for it. They just said it was all in your head back then. 

Linda Elsegood: that's helpful. Isn't it?

Cindy: Yeah, really, not very.

Linda Elsegood: So when you developed Hailey-Hailey Disease, was there anything they could give you to help with that?

Cindy: They ended up putting me on antivirals and using a topical steroid cream that first I thought I had shingles and they weren't really sure exactly what had triggered it. Um, that was the episode. Twenty years ago, then when I had the episode in 2009, they thought it was poison Ivy, and they put me on oral steroids, but it didn't heal the problem. It just continues to spread across my body.

Well, the Hailey-Hailey Disease, there was a lot of pain when it spread across my body. What has happened to me with Haley, Haley is different than some of the other suffers and that I get a blister and from the blister. I can then develop a secondary viral infection, which is like herpes simplex,

which can spread very rapidly across my body. And if that's not gotten under control quickly, it feels like a severe case of poison Ivy and, and a burning, uh, the fibromyalgia. I was just in intense chronic pain all the time.

Linda Elsegood: So before you found LDN, What would you say your pain levels were like on a score of one to 10, 10 being the worst on a bad day.

Cindy: Oh, gosh.

Seven to eight, really? For the fibromyalgia. 

Linda Elsegood: On a good day?

Cindy: Well, they were all. They were all bad days. Really. I'm someone who has it all the time. I didn't have episodes of remission really. 

Linda Elsegood: How did you hear about LDN?

Cindy: I heard about it on our Facebook Hailey-Hailey Disease site. We have a worldwide support group, and one of the members had the idea that it might, might help Hailey-Hailey Disease

Linda Elsegood: And how did you go about getting a prescription?

Cindy: Well, I kept asking my doctors, I asked my dermatologist, and he wasn't particularly interested. And I asked my primary care doctor, and she wasn't very interested. And I finally found a new young primary care physician, and he had read an article about LDN in a journal.

About a year prior and he remembered that there weren't side effects and he was very open to it. So he prescribed it to me.

Linda Elsegood: Well, that's very reassuring having a doctor to that thinks outside the box.

Cindy: well, and the other thing I'll say about him that was so surprising is that he was a new doctor. I did not have a relationship with him, and he was still willing to go ahead and prescribe it, which I found very encouraging because he was that open to it. I think, especially as a younger doctor,

Linda Elsegood: when you first started, did you notice any introductory side effects?

Cindy: I had a little bit of the Herc thing on and off. Um, I felt like I had the flu at various times when I would try to increase my dose. I started on a low dose, and as I would increase, it was almost like I had this cleaning out effect and I felt flu-like, so I would cut my dose back. So I'm one of those people that had to increase it very, very slowly.

Linda Elsegood: And what did you notice initially when you first started taking LDN improvements wise?

Cindy: Well, the first thing I noticed was what I considered almost miraculous on the third night, my trigger points, which are fibromyalgia trigger points that are just so tight and miserable. And my shoulder, neck area started to loosen up.

And I, I mean, I just couldn't believe it. Cause I had taken all kinds of medications over the years and had trigger point injections at a pain clinic and everything and nothing, except that the trigger point injections, which are like an anaesthetic, that was the only thing we would ever open it up like that.

And the LDN on the third night opened it up. And so it was just amazing. And the, that Haley Haley. I, it was more gradual. I just noticed my skin just sort of gradually clearing up.

Linda Elsegood: how long have you been taking LDN now?

Cindy: For several months, maybe six or seven months.

Linda Elsegood: And have you had any further outbreaks on your Hailey-Hailey Disease?

Cindy: I have. I have, I have small ones, but the thing that I've noticed is they seem to, um, get under control much more quickly. I will say that, um, Haley, Haley is a genetic disorder and my father had it. And unfortunately, my father died when he was 60 years old. And I remember that he suffered more in his later years in life. So I'm 56 now. And it seems like. My Hailey-Hailey Disease has been getting worse in the last few years. So it's hard to exactly say how much improvement I've had because I think without the LDN, my Hailey-Hailey Disease was on the path to continually get worse and worse and worse. So I'm happy if I just keep it under like a mild control if that makes sense.

Linda Elsegood: And what would you say your pain levels are now on a, on a bad day?

Cindy: with the fibromyalgia. I would say it's more like on a bad day, more, five to six, definitely much more manageable.

Linda Elsegood: You said before that every day was a bad day. Do you get any good days now?

Cindy: Um, that's tough because I still have really severe problems with chronic fatigue syndrome. I, I haven't had as much of a pickup from the LDN with the chronic fatigue syndrome as I had hoped. So I don't ever have really great days, but

I will say  that I think the LDN has helped my outlook on life and I feel a little more positive and. A little more upbeat. So  even on the bad days, I don't feel quite as a downer is blue.

Linda Elsegood: good. I mean, there are doctors that prescribe LDN for depression. Mmm. That really helps lighten the mood like you were saying. So that's quite promising as well. What would you like to say to other people who are contemplating trying LDN? Chronic fatigue, fibromyalgia or Hailey-Hailey Disease

Cindy: that I really wish they would give it a try and that even if they have to go very slowly and start on a very low dose, that it's worth it, it was really worth going through that I did.  Um, it's definitely been more sticking with, and I wouldn't trade it for anything.

And it's so much more effective. There are so many of the medications out there that caused such side effects. I would encourage everyone to try it. And I have had a number of friends with all kinds of other ailments that have decided to try it. And they're all having good success for many disorders.

Linda Elsegood: do you take anything else for your Hailey-Hailey Disease or fibromyalgia chronic fatigue?

Cindy: Well for the Hailey-Hailey Disease, when I get the initial blisters, now I, if it's severe enough, I use a little bit of topical steroid cream, and I will take an antiviral so that I don't have the chance of it spreading rapidly for the fibromyalgia. No, I don't really, I don't really take anything. Chronic fatigue syndrome.

There's not too much to take either. So there aren't a lot of medicines for these things that I find effective.

Linda Elsegood: Well, that's a very positive story. Thank you very much for sharing it with us.

Cindy: Well, Linda, I want to thank you for your interest in Hailey-Hailey Disease, because it's such a rare disease that there aren't a lot of people that are interested in hearing about it or researching it.

So on behalf of all the other suffers, I really want to thank you.

 

Any questions or comments you may have, please Contact Us.  I look forward to hearing from you. Thank you for joining us today. We really appreciated your company. Until next time, stay safe and keep well.

Carole - England: Chronic Fatigue Syndrome (CFS/ME) (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Carol from England shares her LDN story for ME/CFS. She started showing signs around 15 years ago. She had swollen glands and terrible muscle and joint pain. She also has difficult time making words out when she spoke. She found LDN through one of her friends through Facebook and decide to give it a try.  After she got LDN her pain levels went down and she had way more energy to get through the day. Her Quality of life improved drastically.

To listen to her story click the video link.

Any questions or comments you may have, please contact us. I look forward to hearing from you. Thank you for joining us today. 

Barbara - England: Chronic Fatigue Syndrome (CFS/ME) (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Barbara, from England was diagnosed with Chronic Fatigue Syndrome (CFS) after experiencing symptoms eleven years ago. She started undergoing exhaustion, confusion, memory loss and constant discomfort in her legs. And after a cold/flu, Barbara never really fully recovered. After seeing a GP, it was put down to menopause. 

Barbara stumbled upon LDN a few months ago whilst searching the internet for medication for CFS. After printing off all the details regarding LDN, she went to see if her GP would prescribe it. She was told no, due to government guidelines. So after getting in contact with Linda, she was given LDN. 

Upon initially taking the medication, Barbara experienced strange dreams as the only side effect. These dreams only lasted two weeks. Barbara has noticed improvements in her energy reserves and other symptoms.

When asked what she would say to those contemplating trying LDN, Barbara urges people to go for it and reiterated the fact that “it does not seem to be anything but benefits.”

This is a summary of the entire interview, click the link to watch the video.

Ann - England: Chronic Fatigue Syndrome (CFS/ME) (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Linda Elsegood: I'd like to introduce Anne from England who takes LDN for ME. Thanks for joining me, Anne. 

Ann: It's a pleasure. 

Linda Elsegood: Could you tell me when you first started to notice your ME symptoms, how long ago was - as a child? 

Ann: Actually age three or four, 1978. 

Linda Elsegood: Goodness me, did they recognize it back then?

Ann: No, they didn't. It's hereditary in my case. My grandpa grandfather had it. My Scottish grandfather got it in later life, and he was ill more or less until he ended up his days. He could barely get up. He was in bed until 11 in the morning then came down, had his porridge, went back upstairs, slept, then back down for lunch dressed. Then he sat in the chair for a couple of hours, then back up for sleep, and when he came down for his evening meal. Sitting in the chair then, so 11 to 12, that was his life. And what did they call it? Back then, they didn't know. They thought it was a psychological cause he couldn't speak to people very much. His brain was very bad and you couldn't really speak to him. He didn't join them, the relatives when they came up. He was just a recluse. And my mom had had it as well, but it was triggered in her when she had her children - myself and my brother - and then she could never get up in the morning. She was always limited in energy, but she carried on and nursed me, and tended my brother with pneumonia. And it's amazing that you could do that. But she was just tired and had no energy. Of course, there was nothing done. Nothing.

Linda Elsegood: And did your mother or your grandfather have other symptoms that people often have with ME?

Ann: Well, I think I mentioned my grandfather’s brain was very bad, and he just couldn't socialize, so that was bad enough. And the exhaustion meant that he slept most of the day, which I've just related to you. I think my grandmother did all the accounts and things like that. I'm sure she did that. He could read. He read his newspaper. And noise. We couldn't make a noise, and we went up to live with my grandparents when I was very young. He didn't seem to have a sensitivity to light, because he could read his paper.

My mother did everything fairly normal, but she could never go to my classes and learn things. That's why she didn't go. So she actually was very wise and knew she had no energy, and she adapted to that condition. But you know, she always sat down in the afternoon, and she felt tired the whole time. And when she was 61 she died of cancer.

Linda Elsegood: And you said you had it from about the age of three. What was the pattern of your life? 

Ann: You know how it is with ME, your immune system doesn't fight, and when I had tonsillitis, and they came out, which was the worst thing. I've never felt really well and doing exercise at school, swimming and hockey was really hell. But all the same, I did play games. I played with my brother. And every winter I had a couple of doses of bronchitis, which I have now every year. Until LDN, but I'll explain that later.

So I didn't have a diagnosis at all until I was 59, and struggled because I couldn't get up, couldn’t give up work and I was working all the time. But I had to give up my full-time teaching job in 1976 because I became so ill with - we don't know what it was, but I gave up teaching in Wellingarden city. I moved to Brighton without a penny, actually out of a hundred pounds, something like that. Medical people who could support me didn't because they didn't believe there's anything wrong with me. But that's how it is for many people over my age and younger - the doctors say we should do this and do that, but it was unsympathetic doctoring, usual story. 

Then what happened was I retired, early retirement, I was so lucky. Somebody told me about ME just by checking out of a shop, and in the next lane, a very nice man told me about it. So that was when I got my diagnosis from a doctor locally. I had to pay to get the diagnosis. So then that was the first time I had a diagnosis, and it was such a relief. No, it wasn't MS or the other things that it's labelled. I was terribly, terribly lucky because it wasn't my usual GP I saw. It was somebody who was substituting for him at that particular time? And I got the tip-off to go to him to get my physical examination, which I had to have to retire early. So I went there, and of course, he knew about ME because he asked me if I have vivid dreams, vivid colour dreams. Well, I do because it shows the brain's not working so. 

It has a reaction, you know, you don't suddenly stop teaching, So I was ill for a year and that sort of thing in bed when I wasn't working. Before that, I was teaching, part-time. I had a job for 2 days a week of teaching art. I suddenly couldn't do it. I had to tell lies to the unemployment people and say that there weren't the jobs, instead of telling the truth and say I was ill. So I did that for a long time. And since I've been retired many years, plus, I still had symptoms. I'm talking about the past now, not since taking LDN.

Linda Elsegood:  Could you tell us how you heard about LDN?

Ann: Yes, it was a friend, friend of mine who had this little girl who was not well for years. I remember seeing her child who was then grown up. She was a university student and was trying LDN at the time. So I got the details from her. And information of where she went to get it. So that's how I came to hear about it. And I followed the trail. 

Linda Elsegood: And how long ago was that? When, when did you start LDN? 

Ann: Oh, about a year and a bit now.

Linda Elsegood: So you got your LDN and what was your journey then?

Ann: The journey took a very great while. I saw this doctor at Burswood Christian Hospital. It is way away from here, and I went with this doctor who was taking LDN and my mother, to see this doctor who is very, very sharp. He gave me instructions on how to do it gradually. So then I went away and started doing it very slowly, and I didn't see anything happening in the beginning, but then suddenly I realized I've been taking it all last winter and I never had an attack of bronchitis where I had to go to bed. I had the chest symptoms, but they didn't materialize into such severity that I had to stay in bed. So that was the first thing that I noticed about this. I could plan a little more than I was used to doing. 

My brain symptoms were always severe, and foggy brain is used as a method of description of our brain symptoms. Going back to childhood, I had brain symptoms then. I couldn't concentrate on mathematics.  I just couldn't remember the facts at school. But nonetheless, I used to get a prize there for art and music, which must've been that that side of the brain could actually function more than the factual side of the brain.

And I noticed that I could hardly get myself out of bed in the mornings, usually, I have to go have breakfast and go back to bed, and now I can wake at 8 o'clock in the morning and then get up and go out after that and do something in the morning.

I've always had a car and been able to drive the days as I'm not too ill. So on those days I go out and see gardens, national trust, you name it. It's a lovely sort of thing to do. And I have my evenings as well. As well, before I got the diagnosis and took LDN, I could only walk as far as the length of the house, but then with taking LDN, I could go farther and walk around the garden and just have no reaction afterwards. So I've noticed those things. The main thing is more energy. For example, for 13 years I’ve been in this flat. I didn't have the energy to redecorate it. I had it done. I did all the packing up of the ordinance and things like that, and I was able to go with the painter to get the paint.

All those things I could never have done before. Yes, absolutely. I was at the stage wherein the evening after using my brain during the day for the normal routine things, sort of cooking and running your own life with all the paperwork you have to do and the signing of everything, it's a lot easier. It's just easier to do, without having this sort of reaction afterwards. So I could do that. I haven't been on holiday yet. I used to go sometimes to Scotland. I might be able to again. 

Linda Elsegood: It sounds as though you are definitely getting your life back on track and after all this time.

Ann: Well yes, absolutely. And there's a spiritual side to this, which I won't go into because this is not the nature of this interview, really. The interview is for facts and the result that LDN has had on my life. 

I still find the computer to be very difficult to look at the screen for an amount of time. You know, we can't concentrate and what's in front of us. I still find that odd, but at least I can send an email on those good days. I can do that. 

Linda Elsegood: That's good. And hopefully, over time, things will continue improving for you. 

Ann: I think I improved for about 18 months on LDN and got stronger as time went on.

And one thing I was going to say - everything was going on right, I was ordering the LDN from Glasgow. The doctor wrote me a six-month prescription, and I sent it to Glasgow, and they were sending me LDN. Then came the time when I was running out, and I rang for appointments at Burswood. They thought the doctor wouldn't give me a prescription without seeing me, and I ran out. Without it, I was so ill, as the symptoms all came back because I'd stopped something that I've been having for nearly a year, So I won't let that happen again. This shows a lack of judgment that we have. I could have phoned them and say, look, I must have a prescription, but I didn't think of doing that. Anyway, I've got it now, and it's taken me a couple of months to get back to where I was before. I also drive myself, because the last time I went with friends of my friends and I was absolutely exhausted mentally. So I go on my own now.

Linda Elsegood: Thank you very much for sharing your experience with ME, Ann. I really do appreciate it. 

Ann: It's a pleasure. I hope it's been of some help.

Linda Elsegood: Any questions or comments you may have, please Contact Us on our website at https://ldnresearchtrust.org/contact_us. I look forward to hearing from you. Thank you for joining us today. We really appreciated your company. Until next time, stay safe and keep well.

Amarjid - India: Chronic Fatigue Syndrome (CFS/ME) (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

I'd like to introduce Amarjid from India who takes LDN for CFS/ME.

Thank you for joining me. Could you tell me when you first started to notice any symptoms?

Amarjid: I'm 72 now. I had been suffering from it since I was a small child.

Linda Elsegood: Really? Wow.

Amarjid: A long time. Yes, all my life I suffered from Chronic Fatigue Syndrome.

Linda Elsegood: And how did that impact on your life?

Amarjid: I have not been able to work since 1975. It gives me extreme tiredness and aching in almost all the muscles of the body.

Linda Elsegood: And what would you say, before you heard about LDN, what would you have scored your quality of life on a score of one to 10 and 10 being the best?

Amarjid: It's still there before LDN only have to be about 10%.

Linda Elsegood: What would you have said your quality of life was like on a scale of one to 10 before?

Amarjid: It was really bad and it still bad. Then I felt 10% better.

Linda Elsegood: What had it done to help you? How did LDN help? Has it helped with the fatigue?

Amarjid: It gives me more energy and reduces the muscle pain

Linda Elsegood: And how did you manage to get a prescription for the LDN?

Amarjid: Here It's imperative the GP. He has been describing it me. I only have guidance until next year. I don't know how to do after that.

Linda Elsegood: I might be able to help you with that. I'll tell you details at the end, and I'll send you what you need to do. What would you say to other people who are thinking of trying LDN for EME/CFS?

Amarjid: It doesn't help very much but it helped me 10%.

Linda Elsegood: When you first started, did you have to start on an Ultra-Low Dose and work your way up?

Amarjid: Yes.

Linda Elsegood: And did you notice any side effects?

Amarjid: No. Because it was a small dose. I started in 1 mg and then every month I up to and then 3 mgs 2 mgs two, and now 3,5 mg.

Linda Elsegood: Good. And how long have you been taking LDN?

Amarjid: I think two years now.

Linda Elsegood: Right. Well, that's good. Well, I hope LDN continues working for you, even if it hasn't been that spectacular. 10% is certainly better than where you were before, wasn't it?

Amarjid: Yes, indeed. Thank you very much for sharing your story with us.

Ali - England: Chronic Fatigue Syndrome (CFS/ME) (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Linda Elsegood: I'd like to introduce Ali from England and she has ME.

Ali: Hello. 

Linda Elsegood: Could you tell us when you first started getting your symptoms? 

Ali: I'm in my early twenties. I had a lot of tonsillitis and a lot of colds and flu, and I had them removed, and I was well for a year. Um, and then I moved to London, and I started to get really tired for no apparent reason.

Um, and I just picked up everything going. Then I had glandular fever and lots of jabs to go on holiday. Lots of vaccinations. Um, anti-malaria tablets and, um, antibiotics for, um, an abscess on my tooth. And that was it. I came back from holiday and every one said to me, "It doesn't seem like you're very well. And, um, I didn't feel well at all, but, um, I went through the motions, kept going to work.

And then finally, one morning, I woke up and I couldn't walk.   My legs were too painful for me to move. So, I crawled downstairs and phoned in work  and that was it really. And I kept trying to go back in, and they would just send me home 'cause I looked so dreadful and that was round about 1999 and in 2000 I got the diagnosis

Linda Elsegood: And what were you offered from your own GP? 

Um, well, my own GP was saying I was depressed and I was saying if I am depressed it's because I've gained loads of weight, I'm tired, and I'm in pain. Um, but, you know, but while I was down, I didn't think the problem was depression. Um, but the consultant at the ME centre, um, just offered me antidepressants.

And, um, that was about it really; nothing else. He wanted me to go in and spend several thousand pounds on rehabilitation, and I'd looked into it, and seen there wasn't really a treatment protocol at all. It was just a case of pacing, which means having regular breaks and graded exercise, which is doing a little bit more each day.

And I thought, well, I can do that for myself so I don't need to pay to do it. So they were the only options.

Linda Elsegood: So when did you find LDN?

Ali: I had, um, I went to the hospital in 2001 and they thought I had Cushing's. And, um, I didn't; I had polycystic ovaries so that made me change my diet, and I cut out, um, lots of refined foods, um, so I lost a lot of weight and got quite better. I did a lot of Pilates and Yoga, and I was quite well for a few years.

I went back to work um, and then I lost my job again, I was made redundant then followed with a massive, um cold, um, that lasted a year and a half. And down I went again. So, um, I went 'cause I hadn't done any research for a couple of years because I kind of had the ME under control, though it wasn't true at all um I knew that, um, you never know. They were probably making headway with some treatment or something so I went, frantically searching on the internet to find that there wasn't anything still. Um, but I did come across LDN and. I printed off lots of information and went into my doctor. And luckily for me, he has a special interest in ME so he was very open to me trying LDN.So that's what I did. 

Linda Elsegood: And what did you find LDN did for you? 

Ali: Um, when I first took it, this is, um, December 2009. Um, it's coming up to Christmas and I was really desperate to try it because, you know, I  really thought it'd be great if I have some energy over Christmas, and be normal. Um, but when I first started out, it was quite difficult um, and I was one of the people that couldn't sleep very well. So I changed to daytime dosing. And then after a month or so I went back to night time dosing and I've been absolutely fine. Um, it's been wonderful for my fatigue. Um, my usual routine would be to get up about half-past eight, nine o'clock and by two o'clock in the afternoon, after lunch, I would need to rest, um, and probably sleep. I'd sleep for maybe two hours because that's my routine.

But, um, slowly and surely and I hadn't even realized I wasn't sleeping anymore. Um, I didn't need to. So it's, it's the horrible fatigue that you get with ME. And it seems to, I mean if I overdo it I still pay for things, and I'm tired, that horrible fatigue element you get with ME seems to have vanished. Really, I am still tired, but the actual fatigue element has all but gone really and I am still tired but not fatigued, which is one of the nastiest symptoms for me because you can't really do anything.

You can't go out for the day or work because you have to sleep.

Linda Elsegood: So what about pain levels? Have they improved? 

Ali: Yes, I used to get, um, I used to call it my, I've overdone it pain, um, if I did too much. Then I'd get pain, shooting pains in the top of my hips. And then that was my signal that I need to go and rest. But suddenly before I started taking the LDN and I used to get it quite a lot.

I mean, I used to get it on waking in the morning, so I would wake up stiff and in pain and almost immediately I took the LDN that all stopped as well. So the pain in my hips really, I hardly get it at all only if I do too much. So that's made a big difference. I was going to say, my immune system has really picked up because I used to, um, always have a cold. If I was near anyone who had a cold or a virus or anything, I'd pick it up. I had mumps the year before last even though I've had it as a child, you know, I really would just get anything and everything, but I don't anymore and I'm studying, and I sit next to people in the class who are coughing and you know I don't get it so it's really really helped my immunity.

Linda Elsegood:  Did you have any initial side effects when you first started?

Ali: Um, the only side effect that I suffered was, um, not being able to get to sleep. Um, even with, um, sleeping tablets I still suffered, and I had done a bit of research, and I know it says to take LDN at night because that's when the endorphin effect happens.

But I'd also read that it's okay to do daytime dosing. And I did the daytime dosing for a while, and it still worked and I still, you know, wasn't sleeping during the day, and the pain was still better so I thought it still must be working. And then after a few months I thought, I'll try and switch, so I switched back, and I got a really good night's sleep.

I don't know and that's the other thing. I don't wake up through the night anymore. I used to wake up three or four times through the night. You get broken sleep with ME. Um, but I don't do that anymore. I sleep from when I shut my eyes until I'm open they're open again in the morning and I have to get up. Fantastic!

Linda Elsegood:  A lot of people with ME seem to be very sensitive to drugs.

Did you have to have a very slow introduction? 

Ali: I didn't. I didn't start really small, and because I'm getting - I know a lot of people have to get 50 milligram tablets and put them into water and then take you to know inject - no, not inject, use a syringe to take the LDN. I was actually getting mine prepared specially from the pharmacist. I was taking 3.5, 3mg and

um, and looking back, I did have, sort of my symptoms did come to the sort of top first. I did feel quite dreadful for the first few weeks but that soon subsided. I stuck with it. So thinking about it I probably could have started on a smaller dose, but I do have friends that are on a sort of 0.1 of a milligram, and they've been great on it.

So, I think with ME, you are extra sensitive. So if I would say to anyone if they are trying, to probably start really small um like I didn't. Um, but I'm on 5.5 sorry 4.5 mg now. 

Linda Elsegood: So what would you say to other people with ME on top of that who are rather scared of taking LDN? 

Ali: Um, I would say really give it a go.

You really don't know until you've tried it and it has just been wonderful. It's really nice not to have to sleep, you know, lose half a day through sleeping. Um, it's really nice not to have to go down with a cold every few weeks, especially in the cold season. Hmm. Um, and it's nice to have a little bit of energy, just, it's just been such a fantastic drug.

It's such a cheap drug. Um, and I think if you can take enough information to your GP, um, you know, try to persuade him to try, let you try it, um, as well.

Linda Elsegood:  Oh, well, thank you very much.

Ali:  Please stick with it. It can be a bit bumpy at first, but really stick with it, and you'll see the results.